Hello, my name is Lisa I'm 33 years old and have EHK (epidermolytic hyperkeratosis) for those of your who want to know what it stands for. I'll explain what my skin looks like since I'm unsure what other forms look like. I have what looks to be very thick calloused hands and feet. Then every part of my body that flexes (elbows, knees, etc) has a milder for that looks like a rigid build up of skin and gets flaky as well. My skin is very fragile and can be knocked off with the slightest bump, this goes for the normal looking skin as well. My mother has the condition and I passed on the condition to my now 2 month old son. I was diagnosed with the condition shortly after birth, my mother was never diagnosed. I had genetic testing through GeneDx and found out at the 36 week of my pregnancy that my son would have the condition.
I have tried everything from viatimins, retinoids, Chinese homeopathic, to regular Vaseline. What works best? The Vaseline!
Right now I'm using Carmol 20 on my elbows and knees and Aquaphore on my hands and feet. As I got older some of the effected parts of my my body improved to normal looking skin. As a child like many of you I had a hard time which attributed to a low self-esteem. During college I finally felt a lot better and explained to people why my hands were so rough. While I was doing research for my BA in Sociology I found the FIRST website and was greatful to find out that there were more people than just my mother and I who had the skin problem. I grew up in Hawaii which is wonderful for this dry skin. But I'm here in hot dry Texas now because I married a wonderful man who is in the Army. We had our first and only child 2 months ago. I knew the risks of passing on the condition, but decided that I could deal with the fact that my child would have a 50/50 chance of getting the condition. He was born looking perfectly normal aside from his "dish pan hands). I think my need to have a C-section saved him from having his skin rubbed off during the birth process. Now diapers are a different story all together. The rub his skin off and create blisters. I've tried everything from cloth to different brands. Thanks to others on this BB I tried Huggies Supreme in a larger size and they work great. His skin still looks rubbed but no blisters. When I was born I was told that I had water blisters all over my body. Now I get them occasionally where clothes rub.
My current profession is as a case manager for juvenile delinquents. I guess I got into this field because I wanted to help kids after having a rough childhood of my own. I do enjoy the work however challenging it may be. I look forward to hearing more stories from others.